MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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BillyF's picture
Replies 1
Last reply 4/1/2015 - 11:34am
Replies by: kpcollins31

Hello all.

 

I was diagnosed with Stage II Malignant Melanoma, Nodular type Breslow 5mm, Clark IV. I went through a one-year treatment with Intron A.  I was treated with interferons to delay the recurrence of malignant melanoma. My treatment consisted of a one-month high dose of 30 MIU five days a week, and 18 MIU three days a week for another 11 months. Like many others on interferon, I did suffer from side effects like headache, nausea, fatigue, mild depression, hair thinning, muscle ache , fever, and chills.

 

During that time I was terrified and I feel that, without support of my loved ones, i would become depressed.

What was your experience? How did you cope with your fears? I mean, did you stay positive throughout your treatment and how did you achieve that?

 

Billy

 

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LauraJean's picture
Replies 4
Last reply 4/1/2015 - 11:46am
Replies by: Lil0909, malika, Jubes, _Paul_

Hi I was just wondering how many ladies here have been diagnosed with breast cancer after melanoma. Doing radiation now for stage 1 breast cancer. First melanoma was in 2007 stage 2, then another in situ in 2013, now breast cancer. Is this common? Thanks

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Eileensulliv's picture
Replies 4
Last reply 3/31/2015 - 10:52pm

I had my first ipi plus Nivo treatment about a month ago (my first ever any sort of treatment) and ended up with high fevers and vomiting, among other minor side effects. At first it was believed to be because my thyroid function was way off, hyperthyroidism. But after some time in the hospital and my thyroid improving but my fevers and vomiting getting higher and more frequent, my doctors were stumped. While in the hospital they started me on prednisone and I got better. I've been home a few days, and feel great aside from a lil diarrhea. 

Today I saw my oncologist to discuss how I feel now and where we go from here. He does not want to give me both ipi and Nivo since I had such a reaction to both, so he is going to keep me on Nivo every other week. This will start in 2-3 weeks once I am weened to a low enough dose of prednisone. 

While in the hospital, they did another ct scan. The tumors in my lungs are stable, no growth. There was previously an area in my intestine in which they were unsure if it was pooling of contrast, bowel "filling", or another met. Today that spot is gone off the ct completely! And the best news is there was a 2.4x2.0cm nodule in my intestine which is now 1.7x1.4cm!! So it's shrinking!! I know it's a little early to be so excited, but I just can't help it! the little bugger is shrinking!!

Eileen 

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catrob2015's picture
Replies 2
Last reply 3/30/2015 - 2:01pm
Replies by: Janner, Anonymous

Hi all,

Just looking for abit of advice/reassurance as my husband is about 1.5 years from his diagnosis of stage 1b  of superficial spreading melanoma, it was 1.33 breslow deep. p2ta 

I have obviousley been worried throughout but for some reason i am just so worked up and obsessing about it at the moment, scared beyond belief that it will come back for my husband. My husband is very very moley with big moles and seems to be new ones appearing all the time, little ones, just feel really scared that i am going to miss something or his dr will miss something. We are in the UK so i worry the treatment isn't as thorough as it might be in the U.S and again that it will be missed, particurley when there are so many moles to look at. 

I am finding myself constantly searching/reading re stage 1b melanoma and making me incredibly anxious and depressed. We have a young 3 year old autistic son and i am 5 months pregnant and scared gonna lose my husband and what will i do and that it is a ticking time bomb :'( 

How likely is it to come back?? Is it more likely to show in skin or lymph nodes? And any other stage 1bers that have gone on to be ok, i worry as he has so many moles it is inevitable it will come back :(?

Sorry for the long post and rant. Just really to talk to people who understand, i know there are people a lot worse off and very grateful for where we are now but still can't stop myself from worrying about it.

 

Thank you 

 

Catherine

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barrykatz's picture
Replies 9
Last reply 3/30/2015 - 8:44pm

My father has had his first cylcle of Yervoy. the only side effect so far is very bad itching. to the point where they rash is starting to bleed because of the scratching. Our Dr. said we are not allowed to use any cream on the skin whatsoever. We are only allowed to use Benadryl or Claritin,

 

This really does not make any sense to me. Has anybody used any cream to combat the itchy side effects ipilimumab / yervoy. Please let me know. I really would like to be able to help him with this ASAP. Thanks

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rick1981's picture
Replies 2
Last reply 3/30/2015 - 9:35pm
Replies by: Bubbles, Ed Williams

Hi all,

My wife is taking Dabra/Trametinib (re-challenge after they worked for 5 months up to december) - now in combination with Keytruda. So far it seems the targeted therapy worked for the "new" brain mets (see earlier posts) but the immunotherapy itself doesn't seem to do much (5 infusions so far). 

On Wednesday we'll get a new PET/CT scan and possibly move to Yervoy if the Keytruda didn't do enough.

But I'm writing now because more has been published about immunotherapy plus targeted therapy.

http://melanomanewstoday.com/2015/03/25/ucla-researchers-develop-effecti... (Dr Ribas)

Kind regards,

Rick

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/30/2015 - 5:04pm
Replies by: magnus31

research has found that people with vitiligo have a certain blood protein that offers them some protection against melanoma?

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Cee's picture
Replies 6
Last reply 3/31/2015 - 9:00am
Replies by: Cee, Eileensulliv, Julie in SoCal, Anonymous

When you have a recurrence in the form of a bump under the skin, is it something that popped up very quickly or something that began very innocently enough that you watched it until you felt sure it was something to be concerned about?    Did it begin as a red circle and slowly become a bump beneath the skin and change colour?

If it was something that started out slowly, how long before it was at a stage where you were definitely concerned enough to see a doctor about it?

Thank you .

Cathy 

Stage 3a

Cathy

Stage 3a

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Jubes's picture
Replies 5
Last reply 3/31/2015 - 2:28pm

Hi all

just wondering what kind of pain bone met pain feels like. I have lung and chest Mets and for weeks now have a sharp pain in my back when I breathe deeply ( and pain most of the time there. It's more like the shoulder blade area) not unbearable but so it hurts to turn over in bed. I mentioned it at my last one appt but it was a new dr and he said it was probably just muscle pain. I have had it now for at least 6 weeks and won't see the dr till may. So just panicking a bit. Could it be muscle soreness from the pembrolizumab I am  on?

btw really enjoying all the posts from Brian and Ed etc:)

tks anne-Louise 

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luv4scjjt's picture
Replies 15
Last reply 3/30/2015 - 10:04pm

Hello everyone..I am new to MRF...New to melanoma as well..I was diagnosed in Jan about a week after my birthday. I went to the doc to check out a weird (ingrown hair like bump) on my leg. I nicked it with my razor while shaving and it didn't stop bleeding all day. next morning i called doc to have it looked at. What i thought was an ingrown hair (no color just skin colored bump) turned out to be nodular melanoma. Let the doctor appts begin.....Since then i have had the excision 4cm circumference...the skin graft...thigh was donor sight....and the sentinel lymph node biopsy..which oddly enough almost killed me..lol. I had an acute anaphylactic shock to the die and crashed on surgery table while they were doing the biopsy..Luckily i was still under anesthesia..I didn't feel a thing..lol. Well the results came back that my lymph node was clear..I was very happy and excited and thought that would be the end of doc apt's seen as i was clear. Then i had fallow up with my oncologist and my heart sank.. I still have to do the interferon treatments. Well not have too..... but strongly recommended. The size of my nodule was 4mm. So he is strongly recommending i go through with the treatments because with nodular melanoma i guess their is a high reoccurrence rate. I am very glad that i am only doing this as a precaution and not because it has spread but of course i am worried about treatment. I am 40 by the way. I am healthy (except for this) so i am sure i will be ok. But i am still worried about side effects...Does everyone get the side effects with interferon or is it some do some don't kind of thing? What are the real chances of it coming back if i do or don't do interferon? Of course i am scared and i hope you all can give me experienced honest answers. I don't need things sugar coated. Truth is best for me.....good and bad. What am i looking at?????

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BrianP's picture
Replies 5
Last reply 3/31/2015 - 9:57pm

Some of you might remember the thread from last July talking about living with stable disease. 

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/living-stable-disease-g-samsa#comment-77579

This article in Psychology Today reminded me of that thread.  I thought it was a really well done article and is so applicable to many of us on this forum.

https://www.psychologytoday.com/articles/201503/the-new-cancer-survivors

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BrianP's picture
Replies 4
Last reply 3/30/2015 - 12:47pm
Replies by: BrianP, Ed Williams, Bubbles

A little background. I'm a pilot and unfortunately due to my stage IV melanoma dx in May 2012 I lost my FAA medical. Last week marked my one year anniversary of stable disease. I was told by a doctor that one year of stability and no new mets would be the absolute minimum the FAA would accept if they were to approve my medical. I think it's a long shot at best but I feel great and I'm optimistic about the future so I thought I would go ahead and submit a request to get my medical back. The worst that can happen is they say no. What I wanted to ask is if anyone has seen any data or charts on Anti-PD1 drugs which gives an indication that if you make it to the one year mark your chances of recurrence are greatly reduced.  Due to the drug being so new I’m not sure the data is mature enough to be able to draw that conclusion.  The only thing I’ve seen that somewhat shows the durability is from a Dr. Hodi presenation (page 8 lower left).

http://tatcongress.org/wp-content/uploads/2014/05/140305-hodi.pdf

Thanks for input anyone might have.

Brian

 

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Replies by: Bubbles, Aundrea

Dr. Weber talked to me about this upcoming trial when I had my last checkup and it is now listed on the ClinicalTrials.gov site.  Not yet recruiting...but here's the deal if you're interested: 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/new-ipi-vs-nivo-trial-for-resected.html

It would certainly have been a trial I would have signed up for back in 2010 when I needed it!!!  I wish you all my best!  Celeste

 

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Eileensulliv's picture
Replies 8
Last reply 3/28/2015 - 6:16pm

It's been an interesting week. Since a week after my first infusion of Yervoy and Nivolumab at Hopkins, I was getting intermittent high fevers, nausea and vomiting, and a few other minor side effects. My onc said we are going to delay my second treatment until I get rid of the fevers. Then last week they became not so intermittent at all... Ended up in my local ER Thursday night, and sent home after some fluids, anti nausea meds, and Tylenol. Friday morning I wake up with 103.3 fever and vomiting, so it was off to Hopkins I went. I have never stayed in a hospital before, so I was a bit nervous, but their staff and nurses are exceptional, and made me feel right at "home"! 

I pretty much stumped the doctors as to why they couldn't get my fevers and nausea to go away. They tried the beta blockers again, and stopped after two days. They tried three days of IV antibiotics and no change. Every test and ct came back as normal. So they chalked this one up to a side effect of treatment, and started me on steroids (on day 2 of antibiotics) and just like that, I'm on the mend! The last night of fevers was no fun... 103.5 most of the night, and nurses packing ice packs all around my body every half an hour... Minor bump in the road, and a week's "vacation" in a fantastic hospital. 

However, my onc says he is extremely hesitant about keeping me on the trial, as he does not want to put my body through this again. He is thinking we will just stick to the Nivolumab, but I will meet with him Monday to discuss my options. I would prefer to stay on the trial, but I do know that Nivolumab alone is a very good option. Now that I'm feeling better than I have in weeks, I'm just ready to get this show on the road again!

Eileen 

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